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Addressing Barriers to Care in HIV-Positive African-American Women through an
Interdisciplinary Comprehensive Care Worksheet
Emily Turner
A Project presented to the faculty of
The University of North Carolina at Chapel Hill
in fulfillment of the requirements for
Undergraduate Honors
Date Completed: April 7, 2016
Honors Advisor Approval: ___________________________
Patricia Mahaffee Gingrich, MSN, RN, WHNP-BC
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Abstract
HIV care requires patients to be diagnosed, linked to care, retained in care, prescribed
antiretroviral treatment, and reach viral suppression. Progressively more patients fall off the
cascade at each step, and in doing so struggle to reach positive outcomes. African-American
HIV-positive (black HIV+) women bear a significant burden of HIV morbidity, mortality,
incidence, and prevalence. This is due to multiple barriers to care this population faces that
prevent them from staying engaged in the cascade. A review of the literature was completed to
understand the barrier categories stigma, trauma, social, and medical. These are significant in
both prevalence and severity in black HIV+ women. Comprehensive care is healthcare that
utilizes providers and communication to ensure every member of the HIV care team understands
every barrier a patient faces. This is the best method of care delivery for black HIV+ women
because of their many barriers. To facilitate comprehensive care, an Interdisciplinary
Comprehensive Care Worksheet (ICCW) was developed to promote provider communication.
The ICCW uses information gathered from the literature review of barriers, and was validated by
two HIV care experts. By creating a better method of communication between providers, barriers
to care in black HIV+ women can be identified and addressed more easily, increasing the
likelihood of positive care outcomes.
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Introduction
Human Immunodeficiency Virus (HIV) is a sexually transmitted incurable disease that
compromises a person’s immune system. HIV’s origins in oppressed groups and stigma continue
to affect the lives of HIV patients, complicating disease trajectory and healthcare adherence
(Alonzo & Reynolds, 1995). Marilyn Frye (1983) famously compared oppression to a birdcage
in an essay, serving as a metaphor for how complicated HIV treatment can be for some patients:
Consider a birdcage. If you look very closely at just one wire in the cage, you cannot see
the other wires. If your conception of what is before you is determined by this myopic
focus, you could look at that one wire, up and down the length of it, and be unable to see
why a bird would not just fly around the wire… It is only when you step back, stop
looking at the wires one by one, microscopically, and take a macroscopic view of the
whole cage, that you can see why the bird does not go anywhere. (p.4-5)
This is exemplary of how African-American HIV-positive (black HIV+) women are trapped in
their own cages, surrounded by the wires of barriers that prevent them from reaching HIVrelated health goals. Their unique, complex barriers include increased risk for financial
problems, potential pregnancy, and HIV stigma, all of which affect one another in ways both
seen and unseen by healthcare providers. Attempting to help black HIV+ women live with HIV
by addressing barriers separately and not recognizing the individual patient’s cage is to ignore
the essence of who they are and what they need.
Positive health outcomes only occur when every barrier is acknowledged and treated as
part of a larger problem. Comprehensive care is based in this and addresses the patient as a
whole, understanding that fixing one problem will not necessarily lead to desired outcomes.
Coordinated efforts with macroscopic vision are necessary for comprehensive care. Many
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healthcare providers are on the same HIV care team for the patient, making communication
necessary for care to be comprehensive. Black HIV+ women face many barriers to care that are
significant in both prevalence and severity. To facilitate comprehensive care as the method of
care delivery, an interdisciplinary communication tool was created to increase provider
awareness of individual patient barriers to care. HIV barriers to care exist around the world, but
for the purposes of this project, only black HIV+ women in the United States and their
relationship with comprehensive care will be studied.
HIV Treatment
HIV infection starts with entrance into the bloodstream through contact with sexual fluids
or blood. The most common method of transmission for women is heterosexual contact, while
homosexual contact is the most common method for men (Division of HIV/AIDS Prevention
[DHAP], 2015a). The virus then enters CD4 lymphocytes and multiplies throughout the body
while destroying CD4 cells, eventually leading to immunosuppression and acquired
immunodeficiency syndrome (AIDS) when the number of CD4 cells drops below 200. AIDS
makes the body very prone to certain types of opportunistic infections (OI) that a healthy
immune system would be able to eradicate. Without treatment, HIV would deplete the immune
system; the patient would likely contract an OI, and eventually die. HIV is currently an incurable
disease because of rapid viral mutations and memory lymphocytes; therefore, curative treatment
is not the goal for patients.
According to the Panel on Antiretroviral Guidelines for Adults and Adolescents
(PAGAA), the goals for HIV treatment are to suppress viral load, restore immune function by
increasing CD4 count, reduce HIV morbidity, improve quality of life, and prevent transmission.
(2016, p.D-1). The first step in HIV treatment is being diagnosed with HIV, followed by finding
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a HIV healthcare team, staying with that team, receiving antiretroviral (ART) prescription, and
reaching viral suppression (DHAP, 2014). These steps make up the HIV Care Continuum, a
treatment cascade used to deliver HIV care and identify gaps in treatment. The continuum
outlines steps necessary for viral suppression, which allows the body to recover enough and
create CD4 cells faster than HIV destroys them. While there are many ways to measure treatment
outcomes, viral load and CD4 count are the most objective measurements available that reflect
medication adherence and immune system function.
ART is considered the gold standard of HIV treatment, and has been shown to
significantly reduce viral load in patients, thus decreasing HIV morbidity and mortality
(PAGAA, 2016, p.E-1). Current guidelines recommend starting patients on ART regardless of
CD4 count (PAGAA, 2016, p.E-2). ART prescription is arguably the most important step in the
continuum because it directly reduces a patient’s viral load. The identified treatment goals are
therefore direct outcomes of ART adherence. However, focusing on lab values alone makes it
difficult for providers to connect with their patients and see the best overall treatment.
Approaching all patients with ART adherence as the only priority may alienate patients who
have different treatment priorities for themselves. ART is an integral aspect of every patient’s
HIV care, but limiting patient-provider interactions to discussions surrounding ART adherence is
not an effective strategy. Priorities must be shared between the patient and their HIV care team,
and they must include an ART regimen.
In order for patients to receive the best care possible, they must progress through every
step in the continuum; simply prescribing medications is not a guarantee of viral suppression.
Progressively fewer persons living with HIV/AIDS (PLWHA) are engaged in each step of the
continuum, with the largest gap occurring at retention in care (DHAP, 2014). The National HIV
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Surveillance System defines retention in care as having at least two provider appointments at
least three months apart in the last year (DHAP, 2014, p. 4). In 2011, 86% of all PLWHA had
been diagnosed with HIV, 80% of those diagnosed in 2011 were linked to care, 40% were
retained in care, 37% were prescribed ART, and 30% were virally suppressed (DHAP, 2014).
Less than half of those who were diagnosed stayed in care, and 75% of those who stayed in care
reached treatment goals. These statistics show that the problem does not lie in the medication
adherence step, but rather in the care retention step. Despite having great significance for
treatment success, present HIV care does not need significant changes to ART interventions, but
rather care retention interventions.
African-American Women Disparities
When addressing the PLWHA population, healthcare providers must take into account
black women as a focus of interventions. Black women have the fourth highest incidence of HIV
among the most-affected subpopulations in the United States, preceded by white, black, and
Latino men who have sex with men (DHAP, 2015b). According to the 2014 HIV Surveillance
Report, black women had an HIV incidence rate (out of 100,000) of 30.0 compared to 6.1 for all
women, an HIV prevalence rate of 813.8 compared to 167.7 for all women, and a PLWHA ever
diagnosed with AIDS rate of 435.3 compared to 90.4 for all women (DHAP, 2015a).
Additionally, the CDC Office of Women’s Health found HIV was the fourth leading cause of
death for black women ages 35-44 in 2013, but did not rank in the top ten causes of death for
white or Hispanic women (2015a; 2015b; 2015c). Compared to the general female population,
black women are more likely to be diagnosed with HIV, live with HIV, develop AIDS, and die
from HIV/AIDS. These four measurements of disease demonstrate the current gap in healthcare
for black women; the system is failing them.
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When analyzing the HIV care continuum steps, black women had only slightly lower
rates of care linkage, retention, and viral suppression than all HIV diagnosed women (Whiteside
et al., 2014). Though the undiagnosed population was not taken into account, 2010 reports
showed 81.3% of newly diagnosed black women were linked to care, 50.9% of previously
diagnosed black women were retained in care, and 39.8% of previously diagnosed black women
achieved viral suppression (Whiteside et al., 2014). These statistics are slightly higher than the
overall rates along the continuum for the entire PLWHA population, though there is obvious
room for improvement. When comparing the significant disparities in incidence, prevalence,
morbidity, and mortality, the lack of disparity in the continuum does not seem to add up. If black
women get to care, stay in care, and receive ART as much as the rest of the HIV population, why
are they more likely to contract HIV, develop AIDS, and die from HIV than other women? Why
are they less likely to reach HIV treatment goals?
Dropping out along the continuum affects black women more than other races due to
personal and systemic barriers black women face. They face complex barriers involving multiple
areas of their lives, making them difficult to understand and address. In order to better
understand this paradox and the barriers black women face, I sought to research barriers against
retention in care in this population. Retention is as important as ART in managing HIV, and is
associated with better health outcomes and reduced community viral burden (Thompson et al.,
2012, p.818). However, only half of all diagnosed black women are retained in care. Missing
appointments, even if their ART prescription stands, means patients miss vital health services
that make a big difference for black women. Even though black women could fall off the care
continuum at any step, I have chosen to focus my research on retention because most of those
who fall do so at this step.
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Barriers to Care in HIV+ African-American Women
When identifying barriers to retention in the black HIV+ female community, the
intersections between race, gender, and diagnosis must be taken into consideration. Even though
HIV+ black women fall into each category separately, experiences and barriers felt by the black
community, female community, and HIV+ community do not necessarily apply to HIV+ black
women. Identified barriers in each of these communities must be placed into the context of this
population in order to understand their implications for care. By being sensitive to the most
common barriers black women face, healthcare providers can step back and visualize the “cage”
around each patient, then make an individualized plan with the right interventions, connections,
and people. While there is a lack of systematic reviews on barriers that affect black HIV+
women, a review of the literature revealed four significant categories of barriers: stigma, trauma,
social, and medical (Peltzer, Domian, & Teel, 2016; Grodensky et al., 2015; Lanier, & DeMarco,
2015; Messer et al., 2013). Barriers were chosen based on high prevalence and severity in black
HIV+ women. One notable facilitator of care specific to this population is spirituality, which has
been found to promote care engagement (Dalmida, Holstad, DiIorio, & Laderman, 2012). Even
though spirituality will be addressed differently than barriers, recognizing that spiritual care is an
important part of many black women’s lives will lead to more holistic and comprehensive care.
Stigma
Due to the method of transmission and the original AIDS epidemic in the United States in
the 1980’s, HIV often gets classified as a “gay” disease with negative connotations related to
homophobia in America. Homophobia helped perpetuate stigma initially, but the discrimination
persists through all sexual orientations and genders. For example, one study quoted a young
black woman describing a time she overheard a nurse saying, “They really need to just ship [HIV
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patients] all off to an island so they can keep breathing and infecting each other,” showing how
stigma and discrimination is alive and well within our own healthcare system (Peltzer, Domian,
& Teel, 2015, p.114). This is experienced by all patients, but must be placed in the context of the
black female experience. In another study of the same participants, the common ground found
between young black women was the idea that HIV invaded every part of their lives, from the
obvious medical side to the less expected emotional, spiritual, and social lives (Peltzer et al.,
2016, p.6). Many older black women report strict nondisclosure after seeing friends treat others
with a known HIV diagnosis differently, afraid of being shunned by those closest to them
(Grodensky et al., 2015). Societal HIV stigma creates a strong barrier to care retention because it
manifests primarily in fear of disclosure consequences. Women limit themselves socially,
medically, and emotionally because of their fear of experiencing discrimination due to HIV
stigma.
This limitation is termed the Theory of Self-Silencing, in which black women will repress
feelings and not disclose their HIV status for fear of actual and perceived stigma (Lanier, &
DeMarco, 2015). HIV stigma directly isolates women because of discriminatory acts of others,
and indirectly because of self-induced isolation. Positive social and provider relationships are
key to staying in care and therefore must be facilitated in black women (Messer et al., 2013). The
stigma black HIV+ women face is not just subtle manifestations in casual conversation, although
it certainly includes that as well. Stigma and discrimination infiltrate every aspect of their lives to
the point they are unable to maintain relationships, be true to themselves, and live their lives as
they did before diagnosis. HIV’s history in America cultivated stigma because minorities were
the most affected, methods of transmission were unknown, and patients died horrible deaths.
Though HIV has become a chronic illness and transmission is well documented, the stigma
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persists. The HIV care team must present a united front against stigma to allow black women the
chance for a normal life after diagnosis.
Trauma
The American Psychological Association defines trauma as the emotional response to a
terrible event, meaning that the true meaning of the event relies on how the person reacts (2016).
A 1997 study documented this response in women newly diagnosed with HIV, using each
woman’s own words to show how the diagnosis affected them; over half described a traumatic
response (Stevens, & Doerr). Sometimes the response is severe enough to result in permanent
neurotransmitter changes in the brain, leading to post-traumatic stress disorder (PTSD). Trauma
can also be the result of physical force on the body resulting in injury: a car accident or fist fight,
for example. Injury producing trauma can come from a person close to the patient in small doses
over time, eventually leading to submission, depression, injury, and, in some cases, death. This is
known as intimate partner violence (IPV), which includes physical, emotional, sexual, and
psychological trauma. Black HIV positive women are at a higher risk of developing PTSD due to
their race, have a higher chance of experiencing IPV due to their gender, and must endure the
trauma of receiving an HIV diagnosis and the accompanying stigma (Roberts, Gilman, Breslau,
Breslau, & Koenen, 2011; Breiding et al., 2014). Trauma is a significant barrier for black HIV+
women because of its severity and prevalence in this population.
PTSD develops after a person goes through something extremely dangerous, unsettling,
or scary, and is typically associated with veterans of active combat (National Institute of Mental
Health [NIMH], 2016a). Symptoms of PTSD include nightmares, avoiding reminders of the
trauma, difficulty sleeping, and loss of interest in activities (NIMH, 2016a). Because trauma is
determined by the response to an event, PTSD can come from a variety of places, including IPV
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and HIV diagnosis. If left untreated PTSD can interact with HIV to exacerbate both conditions,
leading to distorted thoughts about oneself and avoidance of reminders; for example, avoiding
the doctor or not taking medication because it is a reminder of HIV (Neigh, Rhodes, Valdez, &
Jovanovic, 2015). This can be a significant problem when typical HIV care includes numerous
doctor visits, at least daily medication, and uncomfortable disease symptoms. Women are more
likely to experience childhood sexual abuse and rape than men, therefore putting them in
situations that could cause later PTSD (Aaron, Criniti, Bonacquisti, & Geller, 2013). Depression
is often cited as the primary mental health comorbidity to HIV, though more evidence shows
higher PTSD prevalence in black HIV+ women seeking mental health services (36%) than
previously thought (Brownley, Fallot, Berley, & Himelhoch, 2015). Confiding in others can be
difficult because of HIV stigma, and if a patient with PTSD finds herself dealing with HIV alone,
good outcomes are not likely. Providers must be aware of existing and potential PTSD in order
to plan the patient’s care correctly and connect them to necessary resources such as a social
worker or case manager.
IPV is physical, sexual, or psychological harm caused by a partner or spouse (Division of
Violence Prevention, 2015). Because this type of trauma can take place over time and result in
unstable living conditions, the chance for HIV care interference is high. In 2014, the Centers for
Disease Control and Prevention (CDC) reported that women experienced all types of IPV (sexual
violence, physical abuse, psychological aggression) significantly more than men in 2011
(Breiding et al., 2014). If a woman is in a relationship with an HIV positive man who rapes her,
her chances of being infected grow exponentially. Depending on the level of control he exerts,
she may never be diagnosed and enter the HIV care continuum. If she is diagnosed, disclosure to
her partner may put her life in danger, limiting her ability to stay in care and take ART as
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prescribed. Fear of her partner may result in complete nondisclosure to friends and family,
resulting in social isolation and risk of treatment failure. Increased stress levels over time can
deplete the immune system and increase the severity of her HIV infection. 55% of HIV positive
women experience IPV, meaning that approximately half of all the women a HIV healthcare
provider sees could be dealing with any of these issues (CDC, 2014). IPV and HIV intersections
are subtle and complex because they each affect many aspects of a woman’s life in extreme
ways; the full effects of both may never be known. IPV adds to the barrier of trauma and
compounds the impact of HIV on a woman.
Social
Social issues have plagued HIV+ people, women, and African-Americans in the United
States for decades, if not centuries. When assessing black women with HIV, providers must
remember the birdcage: wires symbolizing race, gender, and diagnosis are already present,
significantly increasing the likelihood of more social issues affecting HIV care. For example, in
2014, the average income of a black woman was 63% of the average income for a white man
(American Association of University Women, 2016, p.11, Fig. 4). A positive HIV status
decreases this even more because patients must find a job accommodating to their HIV needs.
According to Maslow (1943), a person must address basic needs—food, safety—before
concerning themselves with higher needs—non-emergent medical care, gas, medication. If a
black HIV+ woman only has enough disposable income for either food or a bus pass to her
appointment, she is more likely to spend it on food because it is a basic need. The list of social
inequalities like income disparity is very long for black HIV+ women, so research was focused
on the major problems that prevent optimal HIV care in many ways.
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In order to be engaged in HIV care and reap all of the benefits, patients must come to
appointments. Because personal, well-maintained cars are expensive and are considered a higher
need, black HIV+ women with a lower disposable income may need to rely on public
transportation, trustworthy friends, or questionable cars. While other factors affect the motivation
to come to appointments, limited methods of transportation affect the physical ability to attend.
In rural areas where public transportation is unavailable, systemic barriers such as fewer
educational opportunities and poorer healthcare access prevent black women from having the
means to attend appointments (National Rural Health Association, 2014). Lack of transportation
is enough to keep women from attending their appointments, and was cited as an important
barrier by women in multiple studies (McDoom, Bokhour, Sullivan, & Drainoni, 2015; Kempf et
al., 2010; Messer et al., 2013). Inflated gas prices affect this population significantly because the
income percentage spent on fuel increases dramatically, making it more difficult to travel long
distances to clinics without support (Kempf et al., 2010). Patients are sometimes forced to
choose between being seen at a community clinic where they could be “outed” as HIV+, and
finding risky transportation to far-away clinics (Kempf et al., 2010). Not having reliable
transportation is related to other barriers as well, such as food insecurity, poverty, and
unemployment (Kalichman et al., 2014). Providers may not think about the patient beyond clinic
walls, yet patients often highlight their travel to and from clinic as a major concern.
Unstable housing and homelessness are key social barriers that disproportionately affect
black HIV+ women in prevalence and severity. Without a reliable place to keep medications and
use as an address for important documents, keeping up with HIV care becomes nearly
impossible, thus increasing morbidity and mortality (Audain et al., 2013, p.2). Stable housing is
positively associated with good HIV-related outcomes, and should be regarded as imperative to a
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patient’s health (Leaver, Bargh, Dunn, & Hwang, 2007). Unstable housing increases severity of
disease as well; Khanijow et al. (2015) found that homeless HIV+ people had lower five-year
survival than those who were HIV+ and not homeless. While statistically more men than women
are homeless, African-Americans share a larger burden of homelessness than Caucasians, with
40% of the unstably housed being black (Henry, Shivji, de Sousa, & Cohen, 2015, p.9). Black
HIV+ women’s higher risk for lower disposable income also contributes to unstable housing.
This population experiences a higher prevalence of homelessness due to their black race, and a
higher severity of HIV when they are unstably housed. Therefore, homelessness is a significant
barrier to retention in care, and should be systematically addressed in black HIV+ women due to
their increased risk.
Medical and OB-GYN
Because HIV is an immune disorder, every system of the body is affected by the patient’s
weakened ability to fight infection. Symptoms and diseases can also interfere with a patient’s
HIV medication, disease process, and motivation to stay in care. Providers should be aware of
any medical issues outside HIV their patients are experiencing, but should particularly watch for
OB/GYN issues and depression in black HIV+ women. Other medical barriers are highly
individualized for each patient, and therefore will not be studied for this project.
With some exceptions, almost every black woman being seen for HIV will have ovaries
and a uterus. Half of all women with HIV are under 35 years old, meaning many of them will
become pregnant or want to become pregnant while HIV+ (Kaiser Family Foundation, 2014).
HIV transmission during pregnancy, birth, and postpartum can be all but eliminated if a woman
is diagnosed early in pregnancy via a screening, takes ART as prescribed to reduce her viral load,
and does not breastfeed (DHAP, 2015c). Diagnosis during pregnancy screening is an important
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step for many young women who may not otherwise have contact with the formal healthcare
system; their prenatal care would automatically include HIV care (DHAP, 2015c). The process
can be quite different for previously diagnosed women who face misconceptions regarding HIV
and pregnancy. For example, small but significant percentages of HIV+ women desiring to have
children reported perceived provider stigma that affected how they spoke about having children,
perceived provider disapproval regarding pregnancy, and certain misconceptions regarding HIV
and pregnancy (Haddad et al., 2015). Poor perinatal HIV care is exacerbated by social and
economic factors like transportation and stigma, barriers that already exist for black HIV+
women (hIarlaithe, Grede, de Pee, & Bloem, 2014). If providers continuously ask and educate
HIV+ women on their pregnancies, not only will more women be engaged in care, but also fewer
children will be born HIV+.
While there are barriers to care during pregnancy, postpartum women tend to have lower
HIV care engagement than pregnant women (Mellins et al., 2008). This is partially because the
motivation to protect their unborn child no longer exists as a perceived benefit of HIV care
(Rosenstock, 1966, p.100). Engagement in HIV care postpartum improves the chances of mother
and child survival because of the widespread benefits of HIV care, especially because HIV+
pregnant and postpartum women have a higher level of immunosuppression (Rollins et al.,
2014). All of the barriers in place for non-perinatal black HIV+ women are still in place for
postpartum women, except the postpartum women now also have a newborn baby to care for.
Finances become more limited than before, reducing the amount of disposable income available
for healthcare. These exacerbated barriers are slightly offset by new facilitators to care based
around a woman’s maternal instincts and links to her baby; even though her actions no longer
physiologically affect her child, women express motivation to stay healthy and increase their life
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expectancy in order to “be there” for their children (Boehme et al., 2013). Every woman’s life
changes after a birth, but for HIV+ women the changes could mean lower care retention, higher
viral load, and a higher risk of developing AIDS (Boehme et al., 2013). Retaining HIV+ black
women in HIV care during and after pregnancy is an opportunity all healthcare providers should
be aware of, as it can be the moment women are entered into lifesaving care.
Physical ailments are easier to recognize because of their clinical, objective symptoms,
but mental illness, especially depression, can affect every aspect of a person’s life without being
diagnosed. Patients and providers miss diagnoses because depressive symptoms are attributed to
medication side effects or the shock of a new diagnosis, yet 31% of female HIV patients reported
any kind of depression in 2009 (Do et al., 2014, Table 2). This is because chronic illnesses like
HIV are a risk factor for developing depression, though depression can also exacerbate HIV
(NIMH, 2016b). Depression is also more common among women and non-Hispanic blacks
compared to men and other races, placing black HIV+ women at an increased risk for developing
depression (CDC, 2013). Depression significantly affects retention in HIV care and ART
adherence, and is therefore imperative for HIV providers to address (Zuniga, Yoo-Jeong, Dai,
Guo, & Waldrop-Valverde, 2016). Women may be more vulnerable to depression, and the black
community contains a higher level of depression-related stigma than the white community
(Saadat, Behboodi, & Saadat, 2015; Conner et al., 2010). The complicated relationship between
HIV, women, the black community, and depression shows the far-reaching consequences of
oversight and the necessity of understanding each individual patient’s case.
Spirituality as a Facilitator of Care
One notable care facilitator for black HIV+ women is spirituality—feeling a connection
to the universe or a higher power to find meaning in life—and support from religious institutions.
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Black heterosexual women with HIV reported the most positive effects from spirituality when
compared to other demographic groups in one study, and every woman out of 15 interviewees
brought up spirituality as a care facilitator without being asked in another study (Kremer, &
Ironson, 2014; Grodensky et al., 2015). Women reported relying on God for coping with an
initial HIV diagnosis, feeling closer to God because of their diagnosis, finding a support system
within their churches, and seeking solace in religion when they had no where else to go
(Grodensky et al., 2015). Though some have experienced stigma within their religious
institutions, finding a connection to a higher being can be a powerful link to life. Some of the
studied benefits of spirituality include healing, greater access to a support system, improved
mental health, finding a purpose in life, and finding motivation to “keep going” (Dalmida et al.,
2012). This means greater engagement in HIV care across the continuum and partial offset of
some potential barriers to care. In order to help black HIV+ women reach their full HIV care
potentials, providers must be aware of how many people in this population use spirituality to
cope and how powerful of a coping mechanism it can be. A wealth of care opportunities open
when a patient’s supportive spiritual life and committed HIV care team work together to find the
best solutions for her needs.
Addressing Barriers with Comprehensive Care
It is easy to visualize a cage around each black HIV+ woman with these barriers in place.
Attempting to individually dismantle every force working to keep a patient out of care can be
futile and exhausting. Every member of the HIV care team must therefore practice
comprehensive care, the type of care that treats a patient’s body, mind, and spirit together in
order to identify and address barriers. Every interaction with a healthcare provider is centered on
the provider’s specialty and viewed in terms of the patient’s entire health. Instead of basing care
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around ART adherence, viremia, and immunologic status, care should be based around
individual patient priorities that are the biggest barriers to health for the person. Certain parts of a
patient—her HIV and depression—should not be treated more than other parts—unstable
housing and IPV—because her providers look at her issues microscopically. Comprehensive care
has two important aspects: multidisciplinary care, and interdisciplinary knowledge. That is,
expert providers in every area of care, and knowledge across disciplines to preserve continuity of
care. This allows every member of the care team to see what the most pertinent problems are for
patients and how these problems could affect the outcomes in their own discipline.
Comprehensive care allows a woman’s cage to be visualized, understood, and unlocked.
Aspects of comprehensive HIV care
One of the most defining characteristics of comprehensive HIV care is the coordinating
of people and resources. An HIV care team needs expertise in every area of need for a patient,
and must make this expertise readily available to patients. Just as the barriers for black HIV+
women are complicated, so too must be their care. This directly contrasts with segmented care
when either not enough specialties are represented in a care team or when team members do not
communicate. The discussed barriers are key points that must be included or anticipated in every
black HIV+ woman’s care; therefore, interdisciplinary coordination around these topics must be
facilitated.
The Health Resources and Services Administration (HRSA) identified three structures for
ideal comprehensive HIV care delivery: coordinated services in different locations, co-located
services, and integrated services that are co-located without administrative barriers (2014). Some
“factors for success” in care delivery models include co-located services, diverse teams of
providers, stigma-reducing culture, comprehensive service availability, effective communication,
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and high-quality care (HRSA, 2014, p.5-6). Women have also reported personal preference of
comprehensive care clinics where multiple services are available during one appointment due to
transportation and employment barriers (Kempf et al., 2010). Important members of a
comprehensive HIV care team include specialists from each area of need, HIV expertise from
each provider, and a care coordinator—typically a case manager—to ensure seamless transitions
(Gallant et al., 2011).
The Ryan White Care Act, a federal funding program specifically for HIV/AIDS,
supports comprehensive care by providing insurance to patients who do not have the means to
afford the HIV care they need (HRSA, 2016a). It funds all types of comprehensive services,
including mental health services, transportation to appointments, and child care services in the
Part D program targeted specifically towards women (HRSA, 2016b). Ryan White also funds
comprehensive care programs that have shown positive outcomes in short-term studies, and
funds clinics that offer a variety of services to patients in house (Irvine et al., 2015).
Comprehensive care is at the forefront of tertiary prevention for HIV patients as evidenced by
the HRSA recommendations, the Ryan White support, and the effectiveness of the care.
Because black HIV+ women have so many barriers, it is difficult to effectively treat them
with a few primary care interactions a year, especially when retention is low. Clinics with many
services and highly integrated comprehensive care teams are advantageous for women who have
barriers to care because they have fewer appointments they are obligated to keep. The HIV
stigma patients face negatively impacts mental health; mental illness negatively impacts
healthcare retention; low retention negatively impacts health education; and inadequate
education leads to poor medication adherence and misconceptions regarding HIV and pregnancy.
In a comprehensive care setting not only would each of these issues be more easily treated,
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providers will be able to anticipate problems across disciplines and work with each other to fully
address barriers to care and improve retention.
Communication in comprehensive HIV care
As barriers grow, so too does the patient’s healthcare team, adding experts in every area
of need. Communication in interdisciplinary teams is essential for positive patient outcomes
(Nancarrow et al., 2013). Because comprehensive HIV care naturally involves many disciplines
working together, communication plays an important role in maintaining a flow of current
patient information. Barriers faced by black HIV+ women often affect multiple disciplines; by
identifying a barrier in one healthcare visit, HIV care team members can communicate the
problem to the rest of the team to address the barrier and prevent future problems. This aligns
with both aspects of comprehensive HIV care: each team member must communicate in some
way with every other member in order to understand the implications for their specialty’s
treatment of the patient.
The Ryan White Care Act recognizes the importance of communication, and provides
software called CAREWare specifically designed for patients with HIV/AIDS. Any HIV care
provider has access to this database where patient information is updated and communicated
between all disciplines (HRSA, 2016c). Clinics noted communication via electronic health
records (EHR) as a facilitator of care, which is especially important when services are not colocated (Ojikutu et al., 2014). For example, rural areas with HIV patients over a large
geographical area rely on EHR to communicate between providers when co-located clinics are
not possible (Messer, Parnell, Huffaker, Wooldredge, & Wilkin, 2012). CAREWare and
software like it provide communication opportunities that make patient care more accessible and
comprehensive, regardless of location.
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Because healthcare communication is often via EHR’s, CAREWare and other tools have
great significance in comprehensive care communication. Standard healthcare tools such as
checklists to prevent central line infections and surgical errors have greatly improved patient
outcomes in recent years (Pronovost et al., 2006). Afsar-manesh, Perkins, Breger, & Zadunayski
(2015) developed another checklist communication tool to prevent common hospital problems
that proved effective in reducing negative outcomes. Though these checklists took place in acute
care settings, they also involved interdisciplinary teamwork and communication to reach the best
outcomes. A similar checklist tool for black HIV+ women would offer a simple, streamlined
method of communication where all disciplines could contribute and learn from each other.
Proposal for Interdisciplinary Communication Tool
To facilitate interdisciplinary communication and achieve comprehensive care for black
HIV+ women, I propose an Interdisciplinary Comprehensive Care Worksheet (ICCW). This is a
one-page document with text boxes of common barriers faced by black HIV+ women and
personalized descriptions for each. The ICCW is meant to coordinate and link patients to
preexisting interventions by making important information available to every necessary
healthcare provider. Because every patient is different, every ICCW will be different; text box
organization is based on importance, placing the most pertinent information at the top where it is
seen first. While the template in Appendix A places the boxes in a certain order, arrangement
will vary based on the patient’s principle barriers. The most important aspect of the ICCW is its
customizability, making it transferable to any charting system and any patient. The researched
barriers will be the titles of text boxes, with guidelines for type of information to be placed in
each box below. This is not meant to be an in-depth look at the patient, but rather a concise
snapshot of the most important barriers and facilitators to care. The ICCW gives every HIV care
HIV-POSITIVE AFRICAN-AMERICAN WOMEN
22
team member the macroscopic view they need to address barriers, strengthen facilitators, and
appropriately treat each patient.
At the top of the ICCW (Appendix A) is a heading with patient name, age, medical
record number, contact information including an emergency contact number, latest CD4 count
and viral load with date, last and next HIV appointment date, if the patient has a history of
missing appointments, age at diagnosis, and method of transmission. The rest of the document
will start out as boxes with the headings Stigma, Trauma, Social, Medical, OB-GYN, Facilitators
of Care, and Other. Healthcare providers can write pertinent information in these boxes for each
section. Each box will have expansion options for different categories within the major headings
with the exception of the Stigma heading. Stigma will be a place for patient impressions and
quotes about their experiences to help providers understand the patient’s perspective in her own
words. This is also where providers can enter whom the patient has disclosed their status to in
order to offer insight about how stigma affects their support system. Trauma will have sections
for history of IPV, childhood abuse, sexual abuse, how they reacted after diagnosis, and if they
have or had PTSD. Social will have housing situation, transportation needs, financial status,
employment status, history of or current substance abuse, and significant negative but nontraumatic relationships with a partner, family, or friends. Medical will have a place for
comorbidities, including other important medical diagnoses and psychiatric illnesses, along with
ongoing or past interventions. Pertinent dental history will be here. OB-GYN will have gravidity
and parity status with HIV outcomes if they were pregnant while HIV+, if they are pre or post
menopausal, any education providers have given about pregnancy and HIV, if the woman would
like to have more children, her next cervical cancer screening, comments about her libido, and if
she has pain during sex. This is separate from medical because it applies to every female patient
HIV-POSITIVE AFRICAN-AMERICAN WOMEN
23
with a uterus and ovaries, and is not an illness. Facilitators of Care is for spirituality support and
any other significant support systems in a patient’s life. Other will be a place for any notes about
a patient that do not fall into a listed category, or pertinent notes from provider interactions.
Because this is just a snapshot, each heading will be a hyperlink to take providers to the
specific section of the chart with more information. Boxes can be non-permanently removed if
they are not currently a problem for the patient, though still available from a dropdown menu. In
order to fit onto one page for ease of reading, the boxes will automatically shorten themselves
and create a “click here for more” on each box that does not have everything fit. Even if a patient
has barriers in every listed area, the provider should be able to look at this document and quickly
discern a direction of their care. An example completed ICCW is in Appendix B.
In order to establish content validity of the ICCW, I consulted two HIV/AIDS experts:
Jonah Pierce, ACRN, and Lynda Bell, MSN, FNP. Both Pierce and Bell work at the University
of North Carolina Infectious Disease Clinic, and have devoted their careers to treating
HIV/AIDS patients. Pierce, who serves as the charge nurse of the clinic and a case manager,
believes the ICCW would fit with the patients seen at the clinic, noting the social aspects of the
categories as strengths of the tool (personal communication, March 10, 2016). He also agreed
with the possible transferability to UNC’s computer system, though is not an expert in software
(J. Pierce, personal communication, March 10, 2016). Bell believes this is a “comprehensive
evaluation” for black HIV+ women, and offered suggestions for assessing a woman’s
romantic/sexual relationships. Her recommendations for what to place in different sections of the
tool were incorporated into the development of the tool (personal communication, March 11,
2016).
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Suggestions for Use
Because all places of care have different charting systems, the ICCW is a prototype to be
developed by each institution to fit their system and language. It is also only available
electronically to fit the need of most charting systems, though can be printed when needed.
Ideally it will be the first thing every healthcare provider sees when opening the chart for each
patient and will give them the information they need to adequately plan care. It is essential to
update this document at every healthcare appointment to be sure coordination of care occurs. A
case manager would ideally be the point person for this document, and is who other providers
will report suggestions and questions. The case manager will decide where boxes will be placed
on the document based on patient interactions and reports from other providers; no one else
should change the layout of the ICCW. While similar prototypes could work for other
populations, the ICCW is specifically designed for black HIV+ women to anticipate and treat
their barriers to care, and should only be used with this population. The goal is to create a
customized document that can identify trends and offer insight to types of interventions that
would be most beneficial. Many interventions already exist to take down one barrier to care at a
time, but the ICCW will help these interventions work together to take down both barriers and
barrier interactions.
Providers should ask open-ended questions when filling out the ICCW, and avoid quoting
the document to patients. For example, instead of asking for negative and supportive
relationships in a woman’s life, a provider could ask “Tell me about the important people in your
life. What do they bring to the relationship? What do you bring to the relationship?” (L. Bell,
personal communication, March 11, 2016). This will create space for information not otherwise
offered under specific questions.
HIV-POSITIVE AFRICAN-AMERICAN WOMEN
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The ICCW was developed with outpatient care and tertiary prevention as the main
method of care delivery, and thus the implications and direction for use in an acute care setting
were not studied. However, the ICCW should be accessible to members of the care team in a
hospital if there is a progression to AIDS in order to personalize discharge plans and prevent
further hospitalizations. During interdisciplinary meetings this document should be referred to
and updated, potentially printed as a hard copy for ease of reference. If a case manager is not
available to be the administrator of the ICCW, the HIV provider or other designated team
member should fill this role. The ICCW will work in conjunction with the three identified
methods of comprehensive care delivery—coordinated services in different locations, co-located
services, and integrated services that are co-located without administrative barriers. It will be
especially meaningful for systems that are not co-located because it helps eliminate the
disconnected communication that can occur when physical proximity is not possible.
Summary
The goal of HIV care is to live the healthiest life possible with a low viral load and high
CD4 count. This healthy life is achieved through steps in the care continuum: diagnosis, linkage
to care, retention in care, ART prescription, and viral suppression. These steps are much more
difficult for black HIV+ women due to existing barriers that prevent good outcomes, leading to
this population carrying a significant burden of disease. Just as barriers are complex and
nuanced, so too must be the care black HIV+ women receive. Comprehensive care looks at the
entire patient and treats the person within a body; this is challenging without interdisciplinary
communication between the many providers on a woman’s HIV care team. In order to facilitate
this communication, the ICCW was created to serve as a snapshot of vital patient information so
all providers are aware of the patient’s situation. The best way to treat black HIV+ women is not
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to lean in closer to examine each microscopic reason treatment is failing them, but to step back
and see the larger picture with a macroscopic view. Only then will the patient be strong enough
to fly out of her cage.
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Appendix A
Patient:_____
Age:_____
MRN:_____
Contact #:_____
Viral Load (date):_____
Emergency#:_____
CD4 Count (date):_____
Last HIV Care Appointment:_____
Next HIV Care Appointment:_____
Hx of Missed Appointments (yes/no):_____ Age at diagnosis (method of transmission):_____
•
STIGMA
Patient impressions on stigma in their
lives using direct quotes
Provider impressions based on what
patient reported
Only update if the information here is
no longer accurate to prevent clutter
Who knows she is HIV+
•
•
•
•
•
•
•
•
SOCIAL
Transportation
Housing situation
Financial status (insurance)
Employment
Substance abuse
Negative relationships
Sexual relationships
Romantic relationships
•
•
•
•
•
•
•
•
•
•
OB-GYN
Gravity and parity
HIV status during pregnancy &
outcome for baby
Menopausal status, libido, pain during
sex
Education given about pregnancy and
HIV, safe sex, contraception
Desire to have children
Next cervical cancer screening
TRAUMA
•
•
•
•
•
•
•
•
•
•
•
IPV
Childhood abuse
Sexual abuse
Reaction after HIV diagnosis
PTSD
MEDICAL
Comorbidities
Psychiatric illness
Ongoing/past interventions for
comorbidities
Dental History (if pertinent)
FACILITATORS OF CARE
Support from spirituality
Other significant care facilitators and
support systems
OTHER
This box can be deleted, but is a place where boxes can be added or notes that do not fit in
another place but are pertinent to patient care
HIV-POSITIVE AFRICAN-AMERICAN WOMEN
38
Appendix B
Patient: Jane Doe
Age: 26
MRN: 12345
Contact/Emergency #: 012-345-6789
Viral Load (date): 250
CD4 Count (date): 375
Last HIV Care Appointment: 01/02/16
Hx of Missed Appointments (yes/no): yes
•
•
•
•
•
•
•
•
•
•
•
•
•
•
STIGMA
“I feel like I can’t tell my friends
because they think only gay people get
HIV, and I’m not gay”
Jane lives far away, feels she must
travel to avoid friends at the clinic; has
affected retention in the past
Close family and friends know she is
positive
SOCIAL
Transportation: Jane lives far away and
relies on bus routes
Ryan White member
Current smoker (2ppd)
Works at her local post office
Estranged from brother after diagnosis
OB-GYN
G2 P1; child lives with her
Father of children is current boyfriend
HIV+ during both pregnancies, retained
in HIV care during pregnancy
Would like to have more children
Regular condom use with boyfriend,
conceived in the past via home
insemination (received education)
Next HIV Care Appointment: 03/10/16
Age at diagnosis: 23 (heterosexual contact)
•
•
•
•
•
•
•
•
MEDICAL
Type 2 Diabetes Mellitus
Diabetic foot ulcer R foot
Hx of depression w/o SI
Metformin (no insulin), SSRI
TRAUMA
Was in abusive relationship (physical,
verbal) when diagnosed, no longer in
relationship
Dx with depression after HIV
diagnosis, responded well to
medication
FACILITATORS
Reports regular attendance at church,
pastor and some congregants are aware
of status and are supportive (drive to
appointments sometimes)
Cites children and boyfriend as support
system in her life
OTHER
Patient seemed more depressed than usual 1/2/16 but did not elaborate on cause, will follow
up with phone call before next appointment